Published in Care Home Environment
Jonathan Papworth, co-founder and director of Person Centred Software, unpacks the opportunities and challenges arising from the complex matter of closer data integration between health and social care.
In the not too distant future, there will be no doubt people will say, ‘Do you remember when you had to tell the doctor what your problem was, and if they referred you to a consultant, they then asked you the same thing again? If you then had to see a specialist, they would ask the exact same thing. It was ridiculous that each person had to ask the same questions over and over again!’.
This situation is even worse for people in long-term social care, and in particular for people living with learning disabilities, where family members find themselves repeatedly explaining that their loved one reacts negatively to what health care staff would consider a routine procedure. That could be taking blood pressure, for example, where for some people it can trigger anxiety or even a panic attack.
The current situation where information is not being shared will one day be seen as archaic – and in many aspects of our lives it already is. Personal data such as credit card details can be entered once, stored securely, and used for purchases from any number of different organisations. We expect this as part of our daily lives, so why is personal data about our health needs not shared among the people who provide care?
The simple answer is that it is complicated, but in the past few months significant progress has been made in joining up health and social care information. The reason why care records being communicated across health and social care is challenging is that there are many different systems used. Even within one hospital, for instance, there will be different systems for different teams – each focused on helping people use them with their particular specialism.
There have been a number of attempts to enhance information flow between the different systems over the years, and this has led to some improvements, particularly with GP systems where GP Connect has helped make patient medical information available to all appropriate clinicians.
There are obstacles to gaining access to this medical information outside of NHS practitioners though, and social care in particular has been locked out of accessing this information in the past. Access to GP Connect is changing for social care, but there is an obstacle that care providers need to overcome – I will explain more on this later.
Need for change
Even within the NHS, there are problems with the current arrangements which create excessive bureaucracy. A recent survey found that over two-thirds of NHS providers agree that the current NHS regulatory framework is not working well. Covid-19 created an environment where patient needs were greater than the need to conform to the bureaucracy. This has been seized upon by NHSX as an opportunity to improve sharing data across the whole of health and social
care. NHSX has given a commitment to achieving eight priorities, which are:
- Data and information will be requested, shared and used intelligently.
- System and professional regulation will be proportionate and intelligent.
- Day-to-day staff processes will be simple, helpful and effective.
- The government will legislate to make procurement rules more flexible.
- GPs will have more time to focus on clinical work and improving patient care.
- Appraisals will be streamlined, and their impact increased.
- There will be greater digitisation of services.
- A supportive culture is needed at a national and local level.
The first of these priorities is the one that will, when implemented appropriately, lead to the end of people having to repeatedly explain their medical or social condition, and it can be summed up with a simple phase: joined-up care.
Making joined-up care reality
Joined-up care across health and social care requires a few obstacles to be overcome, particularly in social care where management of access currently held within NHS systems is needed. In order to share data with the NHS, social care needs to be as responsible for the data as the NHS is, and that means meeting the needs of the Data Security and Protection Toolkit (DSPT).
Many social care providers have met an entry level variant of the DSPT, which has given them access to NHSmail, but the entry level option expires in April and to maintain access to NHSmail, or to share any data with the NHS, will require care providers meeting the standard, more stringent, DSPT. That will require an understanding of data security by a high percentage of people working in the social care industry, and a commitment to computer systems meeting certain criteria.
DSPT is a gateway, however, not just to NHSmail, but to many more systems and data sources. One data source is GP Connect, where it will be possible for qualified staff in social care to have access to the medical records for the people they care for, in real-time, at the touch of a button.
Ultimately, this should lead to not just shared medical records, but to the actual medication being able to be shared between different settings, so expensive medication will not be disposed of when a person goes from a care home to the hospital, for example.
The cost to the NHS of wasted medication was estimated in 2015 to be £300m per year, and one of the contributing factors is medication being deliberately destroyed between care settings. There are still some concerns over who will be able to access medical records, and the NHS might be restricting access to just registered nurses, which will leave out residential care homes as well as domiciliary care providers.
Over time, there will need to be processes to validate people like registered managers who have the necessary skills to be able to access medical records. Other rich sources of data in England are Local Health Care Records (LHCR), but these are held in multiple different systems and many of them do not interoperate with each other. In addition, there are 13 different LHCR systems across the country, each operating differently.
Making data work
While it might be acceptable for a health care trust to ensure all the systems used by the trust interoperate with the specification of a LHCR, a social care provider with care homes in multiple parts of the country is going to need to meet the standards for multiple LHCRs in order to provide a consistent level of information flow for all their homes.
This is exacerbated by software providers who supply systems to multiple care providers, meaning that in order to have a credible level of interoperability, all 13 LHCRs would need to be supported. Given the challenges involved with interfacing to a single LHRC, and the limited funding in social care that would need to be used to make the development work viable, there are only a few pilot projects involving interoperability through LHCRs.
This issue is being addressed through a standard provided by the NHS called the National Record Locator (NRL). While this is currently only supported in England, it is being considered for use in Wales and possibly Northern Ireland, and even if Scotland keeps a different system, then at least there are only two standards to cover the whole of the UK.
The NRL allows information to be available to multiple systems using a pointer to show a patient record exists and where it is held. A person can then use the information held on the NRL to contact the organisation where the record is held to request more information, or more importantly, directly retrieve the record if the source system is enabled to allow this.
Increasingly, LHCRs are creating interfaces to the NRL so that all the information available within LHCRs can be accessed via the NRL, and as a result the opportunity for fully joined-up care exists. Making sense of the data The ability to transfer data is only one part of the solution.
While it is better to be able to access a document containing a person’s health or care information from any system where it is appropriate, if every source system structures the data differently, people are going to have to read potentially long documents to find the information they need.
Consider it like a keyboard – it is much easier if every keyboard is a QWERTY keyboard, as the location of any letter is consistent. If every keyboard had their own layout then it would take far longer to find each letter. The same applies to documents, but even more so if the documents are to be consumed by computer systems. Standards are needed for the layout of the data so that every system communicates using the same data layout.
Fortunately, the Professional Records Standards Body (PRSB) has been appointed to develop some of the fundamental standards for the layout of information, and there is an existing standard for some of the content of the information that has been extended for social care. The PRSB has published five draft standards for health and care integration, and some of these are already starting to be adopted by social care software providers.
The first, and most advanced, is ‘About Me’, which contains information that the people who receive care want to share about themselves. About Me will be incorporated into the Core Information Standard that is defined as ‘a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using the services.’ About Me will also be incorporated into the digital care and support plan standard which has been endorsed by the Royal College of Nursing and the Royal College of GPs, as well as the Care Providers Alliance.
The second draft standard that PRSB has published is for ‘Urgent referral from care home to hospital’. This is based on the information shared in the Sutton Red Bag, sometimes called the eRedBag, which has been implemented by a few social care providers and is actively in use.
Another draft standard is the ‘Care homes view (of shared health and care records)’, which will again be incorporated into the Core Information Standard that is expected to be available this year.
The PRSB is looking at the standards for the layout of data, but another standard exists for the content of some of the days, which is the Systematized Nomenclature of Medicine – Clinical Terms, known as SNOMED CT. It currently contains more than 300,000 medical concepts, divided into hierarchies as diverse as body structure, clinical findings, geographic location and pharmaceutical/biological products.
Each concept is represented by an individual number and several concepts can be used simultaneously to describe a complex condition. Healthcare has adopted clinical terminology for many years, and for social care to be fully interoperable with healthcare, then a level of common terminology will be necessary.
From September, there is a commitment from Health Secretary Matt Hancock for the integration of information between health and social care. The exact words are: ‘NHSX expects all areas will have a basic minimum viable shared care record solution in place by September 2021, focused on the integration of NHS Trusts and GPs, and for use in provision of direct care’.
Behind these words there is a massive amount of work necessary to build systems and create standards for data exchange. The PRSB has created five data standards for sharing data, that are designed to provide common data standards so that software providers can use a common format.
The automated communication of information across healthcare will become commonplace in 2021, and social care is included in the plans because the directive given to the PRSB was to ‘create national standards for sharing information between health and social care’.
While 2021 will be the year sharing data gathers pace, it is not going to be the destination for sharing data across all of social care and healthcare. However, the destination has been given a timeframe, and Hancock has again given a very clear expectation of this, saying the NHSX is “aiming to have all social care providers to have access to digitised care records that interoperate with locally Shared Care Records by 2024”.
This year is the start of interoperability, and social care will have to adopt digital care records within the next four years. The pace necessary to reach 2024 with all of social care having implemented digital care systems is a significantly increased rate of adoption of technology.
Person Centred Software is leading the way with shared care, being the first to implement eRedBag and working directly with GP Connect at NHS Digital to bring GP information to English Care Homes via the Access Record: HTML product.
We are now in an exciting digital era that enables interoperability with health services, so that the best quality of care and support can be given to those living in care homes.